lucifer

Forum Replies Created

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • #134314

    lucifer
    Participant

    Hi Susan, how are you? Did you get a follow up with your hematologist? Xx

    #133697

    lucifer
    Participant

    Thanks Susan, I’m in a much better place now but typically now have this to deal with. My husband and I went to a fertility specialist and got a thorough check and everything was ok. Only thing that showed was low progesterone and I’ve been prescribed pessaries as a result. I was extremely stressed out last year and I believe the miscarriages were down to that. Might sound silly to some but I also wouldn’t be surprised if stress has played a role in this trace paraprotein either. Going to get back into exercise and look after myself more from now on.

     

    You sound like you’re really going through the wars healthwise. Hope things improve soon for you. Must be horrible feeling so sick, you poor love.

     

    Please keep me posted on everything, as I will you. Enjoy your hols Susan!

     

    Ps. We just moved house too. Still unpacking!

     

    Best wishes,

     

    Lucy xxx

    #133693

    lucifer
    Participant

    Should also say that I’m from Ireland so maybe things are done a little differently here.

    #133692

    lucifer
    Participant

    Hi,

    My urine has been checked but the results aren’t back yet. The only result I have from that is the normal protein level is very low, which is good. Could be another few weeks for the urine electrophoresis as there’s a backlog apparently. Had the 24 hr collection one…vile. Also had full skeletal x rays, all normal thank God.

     

    I had two miscarriages last year and afterwards I felt very stressed and down. I thought initially I had a hormone imbalance after the miscarriages but now I realise it was stress. I went in Jan to my GP to get my hormones tested before my husband and I tried again. I was feeling a little bit sick at that time, a virus maybe. My neutrophil count was a little low at 1.92 and I had a strange rash around my neck for two weeks previously and then it resolved. I thought it was an allergic reaction but it seemed to last ages.

     

    One of the tests was for thyroid and they noticed a low background reading and so a serum protein electrophoresis test was done and my immunoglobins were checked to see if my immune system was ok. My levels were fine but a “trace of a tiny iga lambda monoclonal band” was detected.

     

    I didn’t hear about this until the end of March. Repeated the tests in early May and the trace is still present. Repeating the test in November.

     

    It’s important to get all your info together and keep on the back of medical professionals! I hound them, I’m sure they dread me! You have to be your own advocate.

     

    Hope you’re feeling ok.

     

    Best wishes,

     

    Lucy

    #133689

    lucifer
    Participant

    Forgot to say, I haven’t been formally diagnosed yet. MGUS has been mentioned as the trace paraprotein is still there. The hematologist has sent a letter to GP to repeat test in November.

    #133688

    lucifer
    Participant

    Hi,

    It’s horrible to feel like you’ve to chase up on these medical professionals. It seems, from what I’ve read and my own experience, that many GPs have never even heard of MGUS.

    As for me, I’m 37 and I had bloods taken in January. One of the thyroid tests had a low background activity reading which can suggest low immunity so it was reflexed for quantitative immunoglobulins and a SPEP test. The levels of immunoglobulins were fine but a trace of a tiny igA lambda paraprotein was found in the beta 2 fraction. The tests were repeated in May and I’m still waiting on a few. The results I do have are normal, apart from the trace that’s still present and can’t be quantified. The haematologist and immunologist say that there’s a chance it could disappear eventually so retesting in November. There’s a chance that it could hang around also so will just have to see.

    Healthwise, I’m lucky to feel very well. I get very anxious about these tests however which I’m finding harder to deal with more than anything.

    Your m protein/paraprotein level must be quite low? I’ve heard there can be fluctuations in readings too.

    All the best and try to enjoy your holiday!

     

    Lucy

     

    #133684

    lucifer
    Participant

    Hi,

    How frustrating for you! The lack of communication is astounding. Did you get any results back yet? The waiting is so horrible.

    My follow up tests are in November, had a trace reading in January and May.

    Hope you’re ok.

    Best wishes,

     

    Lucy xxx

Viewing 7 posts - 1 through 7 (of 7 total)